Decoding Dyslexia: How a New Jersey Parents' Group Started a Movement

Parenting a school-aged child with dyslexia requires strategy, savvy and time. Frankly, not all of us possess these attributes in equal measure and the job often seems beyond our means and abilities. The screenings and evaluations, planning and homework support, emotional pep-talks, talking to teachers and administrators, identifying best supports and assessing what is available, navigating legalities, keeping up-to-date on the latest educational interventions and assistive technologies -- all of this leaves most parents feeling depleted and inadequate.

As parents of dyslexic children, we also know that the journey should not be so difficult or confusing. Even by conservative estimates, one in ten children is dyslexic. Why should our students have to fail before they qualify for help? Why are so few teachers trained to teach them? Why are the evidence-based programs not being used in every school? Finally, if we know that dyslexia is a condition that responds well to early intervention and prevents children from suffering from a host of other problems, why are public schools not taking a proactive approach?

One group of parents in New Jersey decided to do something to address these issues. Just a little over a year ago, twelve parents met in a local library in central New Jersey to launch Decoding Dyslexia-New Jersey. This group came together with the ambitious mission to "raise dyslexia awareness, empower families to support their children and inform policy-makers on best practices to identify, remediate and support students with dyslexia in NJ public schools." These parents knew that if they continued to see their challenges as unique and personal, there was a slim chance that the situation for dyslexic children and their families would change. Galvanized by their common struggles, they endeavored to change their state laws so that children like theirs could get the education that they deserved.

One should never underestimate a group of determined parents.

Over the past year, I have been tracking the progress of Decoding Dyslexia. It has proven to be an inspiring study in commitment, strategy and persistence. This relatively young group can mark their progress with significant state level impact in New Jersey. They have convinced eight New Jersey Representatives to join the U.S. Bi-Partisan Congressional Dyslexia Caucus, have helped publicize the work and recommendations of their state's Reading Disabilities Task Force and are currently working to get six dyslexia-related bills passed in the New Jersey State Assembly and Senate. Most importantly, they have spurred an extraordinary parent movement. Inspired by their inclusive model and success, today, Decoding Dyslexia branches have sprouted up in many states, including CA, VA, TX, CO, CT, AL, WV, OR, FL, KS, PA, MD and WI, and it seems like every few days there is another state to add to the list.

As their model goes viral, the New Jersey founders have generously added another arm to their work: offering new state-based groups support and advice gleaned from their own experience. DD-NJ has even written a grassroots guide for other states. I asked Deborah Lynam, one of the original founders of the New Jersey group, what parent groups can learn from their group's initial success. Communication and collaboration are clearly central to their strategy. They have a Facebook, Twitter, and a Yahoo parenting networking site as well as a fully integrated website. However, I was most struck by their guiding philosophy of inclusivity, humility and gratitude. Committed to eliminating any barriers to participating, there are no membership fees or requirements and they try to make the work as accessible as possible for interested parents by creating templates of letters and providing addresses and phone numbers for policy-makers. "We maintain a positive, motivating attitude and consistently thank parents for their efforts and ideas." They also understand the importance of celebrating and supporting the work of like-minded organizations, linking with organizations like Learning Ally, The NJ-International Dyslexia Association, The Yale Center for Dyslexia and Creativity and others. Lastly, Deborah cautions, "We have been careful to communicate that we are not here to do the work for parents and students in NJ. This is a group that needs its members to see their critical role in the success of their work."

As for me, I am sold. With a DD-CA branch just forming, I am eager to take on dyslexia policies in my own state. And as Decoding Dyslexia-USA takes shape, I look forward to pushing for more enlightened national policies as well.